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Just four days after Maine confirmed its first case of the coronavirus, Seren Bruce received a different diagnosis that would nevertheless be shaped by the pandemic.
On March 16, a doctor at Northern Light Cancer Care in Brewer who had reviewed Bruce’s bloodwork diagnosed her with non-Hodgkin’s lymphoma, a type of cancer that grows on the white blood cells.
Bruce — who lives in Hampden and has retired from a career in psychotherapy because of health problems from Lyme disease — was told to return in late March for an evaluation by an oncologist, but that appointment was eventually moved to the phone.
On the March 26 call, the doctor said Bruce, 59, needed to come back for a full body CT scan to determine the spread of the cancer, but that the imaging would be postponed until June because Bruce’s cancer appeared to be slow-growing and she couldn’t risk catching the coronavirus that seemed to be multiplying across the state.
“She said that in an ideal world, she would immediately send me for CT scans, but that it’s not an ideal world and she was concerned about putting my life at risk with exposing me to the virus,” Bruce recalled. “I listened to her and said, ‘OK, I don’t want to get COVID. That makes sense.’”
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But Bruce’s mood soon changed. While she understood the doctor’s concerns, she was also bothered by all the questions about her cancer that wouldn’t be answered for months. “After the call, I let it kind of settle in and just became really terrified of waiting,” she said. “I don’t even know what it’s going to be like in June. What if I can’t get the scans then?”
Bruce’s diagnosis has come at a particularly fraught time for cancer patients, who often have weakened immune systems as a result of their treatments or cancers, and who may be more likely to become seriously ill from COVID-19, the disease caused by the coronavirus.
Now, hospitals have delayed all sorts of non-emergency services to preserve their resources and to prevent the virus from spreading among vulnerable patients, leading to delays in some care for cancer patients.
While it might make medical sense to delay or adjust treatments during the pandemic, those changes have still added to the stress, isolation and uncertainty already felt by patients such as Bruce. Even though some parts of their care may not be considered critical in the short term, they still feel uncomfortable kicking them into the future.
According to a recent national survey of 3,055 cancer patients and survivors, half reported some impact to their health care from the coronavirus, and about a quarter of respondents in active treatment said that some aspect of their treatment had been delayed.
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In-person visits to health care providers were the most commonly disrupted service, affecting half of respondents to the survey by the Cancer Action Network, an advocacy arm of the American Cancer Society. About a fifth of respondents also reported disruptions to support services such as therapy and to imaging that monitors the growth of their cancer. In addition, nearly four in 10 respondents were concerned that the economic slowdown would affect their ability to pay for medical care.
While Maine health care providers are continuing to offer testing and treatment for active and potential cancer patients, they have been taking a number of steps to limit how much of that care is delivered in person, including moving appointments to video conferencing programs or phone calls, and adjusting medication doses so that fewer follow-up visits are required.
In some cases, providers are adjusting the order of oral and intravenous chemotherapy, hormonal therapy, surgery or other treatments that a patient is set to receive.
Providers have also delayed in-person care when the short-term risk is determined to be greater than the long-term benefit of the visit, perhaps because the care is not central to a patient’s treatment — such as an injection to strengthen their bones — or would compromise their immune system, according to Dr. Sigrid Berg, the medical director of Northern Light Cancer Care.
Berg said that she was not familiar with Bruce’s case and, regardless, would not be able to discuss it because of patient privacy laws.
In general, newly diagnosed patients have usually been offered an in-person visit unless they are at a very high risk of complications from COVID-19, Berg said. She noted that care for some existing patients with slow-growing cancers — such as low-grade lymphomas — involves monitoring symptoms over time. Now, those patients are being offered telehealth visits to assess whether their next in-person appointments are still necessary.
“We are really trying to focus on making sure they are safe,” Berg said. “We are going line by line through all these lists of patients to make sure we’re doing right by each one. It’s an onerous task. But if a patient has new symptoms and needs to be seen, we will see them.”
Berg said that providers are making their decisions based on guidance from groups such as the American College of Surgeons and the American Society for Radiation Oncology about how to prioritize treatments through the current health crisis. She also said that some patients have been volunteering to forego in-person visits.
Berg urged any patients who have concerns about their care to call their providers.
At the Harold Alfond Center for Cancer Care in Augusta, providers have been making many of the same decisions, according to Chief Medical Officer Dr. Steven Diaz of MaineGeneral Health.
While a lot of cancer care causes side effects that require follow-up care, he said the organization has moved as many appointments to the phone as it can, but still offers in-person visits. That’s particularly important when patients complain of severe symptoms such as breathing problems or chest pain, according to Diaz.
“Especially in the world of oncology, if something needed to be done and it can’t be done in a remote fashion, we would safely bring them in,” he said.
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Health care systems seem to be making appropriate decisions during the COVID-19 crisis, said Hilary Schneider, the Cancer Action Network’s director of government relations for Maine.
Still, Schneider said that she’s concerned about the long-term effects of some changes, such as the delay of routine screenings for breast, cervical, lung and colon cancers. It’s also unclear how patients could be affected in the long run if providers are adjusting their treatments based on what’s more or less likely to require follow-up visits.
“Any time you’re adding other components to treatment decisions, besides just what is the best outcome for the cancer, then we just don’t know what the effects will be of that,” she said. “The doctors are up front with patients about that and patients are often involved now in making those decisions.”
In Hampden, Bruce has tried to reschedule her appointment for the CT scans to an earlier date, without any luck. Right now, she has instructions to get back in touch with her doctor if her health worsens. She has struggled with low blood pressure, fatigue and trouble eating, but does not know whether those symptoms are connected to her new cancer diagnosis.
In general, slow-growing cases of non-Hodgkin’s lymphoma that don’t cause symptoms should be monitored but may not require treatment for years, according to the Mayo Clinic. Advanced cases can be treated with chemotherapy, radiation, bone marrow transplants and other therapies.
Bruce has suffered from anxiety thinking about her diagnosis. Grappling with it has been all the more challenging because she lives alone and can’t risk seeing friends or family members in person, in case they are carrying COVID-19 themselves.
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“I haven’t even been able to get a hug from a family member since I was diagnosed,” she said.
But in the midst of all the gloom, she still has been finding moments of joy. Her son runs errands for her, and they sometimes talk or go for walks while keeping at a safe distance. She communicates with her other kids and grandkids online. Her neighbors have snowblowed her driveway and dropped off meals and comfort food, including a delivery of whoopie pies that arrived Monday afternoon. She also enjoys the close company of two 5-year-old cats and her nearly 3-year-old miniature Labradoodle named Joey.
While in-person support groups have not been an option, she has been taking advantage of those offered virtually by the Beth C. Wright Cancer Resource Center in Ellsworth through the video conferencing program Zoom. She is also trying to focus on healthy eating and meditation.
“It knocks you for a loop when you first get the diagnosis,” she said. “You immediately start thinking about death. Like, ‘Really, is that going to happen to me?’ There is a grief process, but once you get through that, you start seeing life, and what you have to live through.”
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